Over the past decade, public health approaches to end-of-life care have received increased literature, policy and practice focus. These developments recognise the significance of community engagement activities and their contribution to end-of-life care. In the United Kingdom, community engagement is a priority for the majority of hospices. Nevertheless, there exists some ambiguity about the range of different practice that exists under this heading, the principles underpinning it and the outcomes for the work. Conceptual clarity is an essential next step in the development of this emergent field. The aim of this paper is to present a definition and a conceptual model of community engagement for end-of-life care services and the communities they serve. A spectrum of community engagement in end of life care is presented, derived from models in the general community engagement literature. Types of engagement extend on a continuum from informing through consulting, co-producing, collaborating to empowerment, with the later levels capable of achieving more penetrating health and social change. The factors that affect the type and nature of engagement are represented in boxes at either end, demonstrating that it is not the influence of a single factor, but the overall balance of factors that determines the quality and outcomes of the engagement work. This spectrum is designed to aid professional services and the communities they serve to embark on community engagement projects with an open awareness of the requirements and key components underpinning their success and a shared understanding and language.

There was a 66% response rate. Of those providers, 60% indicated that public health approaches to death, dying and loss were a current priority for their organisation. Respondents identified a range of work being undertaken currently in this area. The most successful were felt to be working with schools and working directly with local community groups. The findings demonstrate the relevance of a public health approach for palliative care services and how they are currently engaging with the communities they serve. Although the approach was endorsed by the majority of respondents, various challenges were highlighted. These related to the need to balance this against service provision, and the need for more training and resources to support these initiatives, at both national and community levels.

Clinically, both percutaneous and surgical approaches to deliver viral vectors to the heart either have resulted in therapeutically inadequate levels of transgene expression or have raised safety concerns associated with extra-cardiac delivery. Recent developments in the field of normothermic ex vivo cardiac perfusion storage have now created opportunities to overcome these limitations and safety concerns of cardiac gene therapy. This study examined the feasibility of ex vivo perfusion as an approach to deliver a viral vector to a donor heart during storage and the resulting bio distribution and expression levels of the transgene in the recipient post-transplant. The influence of components (proprietary solution, donor blood, and ex vivo circuitry tubing and oxygenators) of the Organ Care System (OC) (TransMedics, Inc., Andover MA) on viral vector transduction was examined using a cell-based luciferase assay. Our ex vivo perfusion strategy, optimized for efficient Adenoviral vector transduction, was utilized to deliver 5 × 10 13 total viral particles of an Adenoviral firefly luciferase vector with a cytomegalovirus (CMV) promotor to porcine donor hearts prior to heterotopic implantation. We have evaluated the overall levels of expression, protein activity, as well as the bio distribution of the firefly luciferase protein in a series of three heart transplants at a five-day post-transplant endpoint. The perfusion solution and the ex vivo circuitry did not influence viral vector transduction, but the serum or plasma fractions of the donor blood significantly inhibited viral vector transduction. Thus, subsequent gene delivery experiments to the explanted porcine heart utilized an autologous blood recovery approach to remove undesired plasma or serum components of the donor blood prior to its placement into the circuit. Enzymatic assessment of luciferase activity in tissues (native heart, allograft, liver etc.) obtained post-transplant day five revealed wide-spread and robust luciferase activity in all regions of the allograft (right and left atria, right and left ventricles, coronary arteries) compared to the native recipient heart. Importantly, luciferase activity in recipient heart, liver, lung, spleen, or psoas muscle was within background levels. Similar to luciferase activity, the luciferase protein expression in the allograft appeared uniform and robust across all areas of the myocardium as well as in the coronary arteries. Importantly, despite high copy number of vector genomic DNA in transplanted heart tissue, there was no evidence of vector DNA in either the recipient’s native heart or liver. Overall we demonstrate a simple protocol to achieve substantial, global gene delivery and expression isolated to the cardiac allograft. This introduces a novel method of viral vector delivery that opens the opportunity for biological modification of the allograft prior to impla...

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Children’s voices are missing from debates related to the idea that death is a taboo subject and this limits understandings of how children encounter death. Drawing on data from focus groups with children aged 9–12, this paper aimed to explore if and how children experience death as a taboo, but discovered that the death‐taboo thesis lacks nuance, confining and misrepresenting children’s experiences. Death ambivalence is thus proposed as a conceptual tool to illuminate children’s relationship with death. It identifies policy and practice implications concerned with developing death literacy and brings a new theorisation to death and childhood studies.